life and death decisions

Maddie's NICU Buddy Liam is back in the hospital and may be facing additional surgeries.  Maddie and Liam spent 24 days side by side in the NICU.  Our families grew close, our toddlers became friends.  Please consider making a donation to his family as they continue to fight and prevail in their CDH battle: Donations for Liam

Early after we were diagnosed, someone told me that I may have to make some really hard decisions in order to avoid making even harder decision later.  i've watched about 50 other families on their CDH journey struggle with the same decisions we made.  And universally, each family has made the best decision for their baby and for their family. For some this meant aggressive medical care at all cost.  For some this meant conservative care, some choose to let nature take its course and some choose termination.  And in each case, it is clear to me that the parents know their baby and their family the best and are making the right decision.  They know exactly how hard and how long to fight, even though we all have doubts along the way.  The parents with growing CDH babies seem to be wonderfully equipped at meeting their family's needs.  The parents who lost their babies seem to be working toward peace and acceptance.


I recently read a book called "Loving and Letting Go: For Parents Who Decided to Turn Away from Aggressive Medical Intervention for Their Critically Ill Newborns."  It is the opposite of a "right to life" book and talks extensively about how sometimes the most loving and merciful decision a parent can make is to prevent or release their child from suffering.  The author quotes a neonatalogist as saying "If God gives you a baby but takes away the heart, lungs, brain or kidneys, maybe He's trying to tell you something".  

At first reading quote, I was really offended.  It seems too crass, too honest, too confrontational to be compassionate.    I was looking for affirmation that we had made the right decision when we took Maddie off of support, some kind of comfort.  And here was this expert saying we never had a chance.  


But as I finished the book and thought about this quote over the past couple of weeks, I realize that this offensive quote is very affirming.  We did give Maddie the best chance at life considering what we knew during each stage of her development.  And when there was no longer a chance at life, we let her go.  


But in reality, Maddie could have "lived" longer.  We had additional medical options that could have kept her heart beating and blood circulating.  She would have been in pain, unable to be held, constantly sedated.  If she had ever come off of life support (slim chance but who knows) she would have had severe mental retardation that would have affected every aspect of her development.  She probably would have been on dialysis for most of her life.  In and out of the hospital.  Sick or sicker, but never healthy.  She may have needed a trach tube in order to breath.  Likely would have needed medical assistance her whole life to eat.  There are many parents raising children with all of these complications, if not more, and despite the demands of care, they love their child and considering them a blessing and a joy.  

The term "life" is a bit subjective.  Many people, including western medicine, talk about life as a heart beat and a pulse.  And I disagree.  Without brain function, without any hope of consciousness, happiness, sorrow, love, independent thought, free will, the ability to thrive and interact there is no life.  A body and a pulse do not make a life.  I held a body and a pulse in my arms and Maddie was no longer there.  



I would like to think that I would have risen to the challenge if our journey had taken a different road.  But, we never had to see Maddie go through anything as extensive and invasive as what I describe above - and I have to be honest, I'm relieved.  


I wish every moment of every day that my little girl was still alive.  That I could just hold her one more time.  Just see her or touch her or smell her or whisper in her ear.  I want her more then I want my next breath.  But I feel relieved she isn't still struggling for every breath she takes.  I'm relieved I don't resent my daughter for taking over my life, our lives, our family, because her care demands so much.  I'm relieved that Dillan isn't going to live in the shadow of his sister's illness.  I'm relieved we aren't fighting so hard for life that we are causing Maddie prolonged suffering.

She is my angel baby and there is a hole in my heart and things will never be ok again.  But she is at peace - the turmoil and suffering are mine.  And as her mommy, if she can't be at peace alive, I am thankful to be the one suffering her death.